When the mind won't say stop

Elizabeth Ando is a good example of what can go desperately wrong when a person with obsessive-compulsive disorder doesn't get treatment.

Eight months pregnant and incapacitated by a cleaning compulsion that had plagued her for more than a decade, the 34-year-old Victoria, B.C. resident went to both her local hospital and her family doctor for help.

The hospital was too full to take her and sent her home. Her physician was worried that she would hurt the expected baby by cleaning it too zealously and, unbeknownst to Mrs. Ando, called the provincial Ministry for Children and Families.

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On March 1, 1998, Mrs. Ando gave birth to a daughter, Megan. Her delight was shattered about an hour after the delivery, when two social workers and a security guard came into her hospital room, asked her friends to leave, and told Elizabeth and her husband Thomas that they could not have custody of the baby because of her illness.

While the shocked couple sought legal help, Mrs. Ando established a breastfeeding routine with Megan, whom she was allowed to visit in the hospital nursery. But three days later, the baby was taken away and placed in foster care.

"It was a nightmare," Mrs. Ando recalled in a recent interview. "I had to go home without my baby."

In complete desperation, the Andos went to the media to tell their story. The publicity helped and Elizabeth jumped the queue into a six-week in-patient therapy program in Vancouver. After three and a half months of medical treatment and more legal battles, the Andos were reunited with Megan and have cared for her since.

Excessive cleaning is only one possible manifestation of OCD, which expert Dr. Richard Swinson calls "one of the most tenacious of mental illnesses." Dr. Swinson is a professor in the department of psychiatry and behavioural neurosciences at McMaster University and psychiatrist-in-chief at St. Joseph's Hospital in Hamilton.

OCD, which strikes 2.5 per cent of the population, is more common than better-publicized disorders such as schizophrenia, Alzheimer's or eating disorders. "It can be, and is, as devastating as schizophrenia and we have much less in the way of resources to treat and rehabilitate OCD than schizophrenia or mood problems," said Dr. Swinson.

Effective treatments such as medication and cognitive behavioural therapy do exist for OCD and Canadian experts are excited about improvements in the field, particularly a computer-driven telephone voice response system of therapy delivery. But many people who need help are not getting it.

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OCD usually begins with persistent and upsetting thoughts that turn obsessional, such as whether you turned the stove off, being contaminated by touching something, having sex with someone you find repugnant or even stabbing your own baby.

Typically, these obsessions cause anxiety. The person then develops a compulsion to do something that will ease the anxiety. The response usually takes the form of a repetitive action -- such as repeatedly checking the stove, handwashing to get rid of the contamination, avoiding the object of sexual obsession or rituals to avoid harming baby.

Another symptom of OCD is fear of losing something precious. These people tend to be hoarders, filling their homes with what other people would consider to be garbage.

People with obsessive-compulsive disorder know that what they are doing is abnormal but they can't stop it. Sometimes they harm themselves.

Take the case of a 22-year-old woman who was a repetitive skin-picker. Like other compulsive skin pickers, she would spend about two or three hours a day picking: first to get rid of small blemishes and then digging deeper and deeper until the ritual was complete.

According to the Obsessive Compulsive Foundation in the U.S., this young woman picked a hole through the skin and muscles in her neck and almost lacerated her carotid artery, which would have been fatal.

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Researchers believe that OCD is partly caused by a dysfunction in the brain's regulation of a neurotransmitter -- or chemical messenger -- known as serotonin. It might be triggered by life circumstances, stress, infection and perhaps hormonal changes in girls.

Evidence is mounting that OCD runs in families. "If a parent has OCD, a child's chance of developing the disorder would be five to 10 times greater than the general population," said Dr. Peggy Richter, a staff psychiatrist in the Anxiety Disorders Clinic at the Centre for Addiction and Mental Health, Clarke Division, in Toronto.

OCD is a disease of the young, generally starting between age 6 and 15 for boys and in the 20s for women. For a very small number of children, OCD develops suddenly after a streptococcal infection. It is thought that in these cases, the disorder develops as an autoimmune response to the strep.

Because of its frequently early onset, OCD often has a major impact on people's chances of finding a long-term mate and a good job.

On average, it takes 11 years for patients to seek treatment. This is partly from a desire to keep it a secret and partly because the illness starts so insidiously.

"It didn't come with a marching band," said Lynn Clark, a 53-year-old self-professed "washer and checker" from Grimsby, Ont. She reckons she has had the illness since her 30s. "It goes from rational to irrational. I starting washing twice rather than once just to make sure my hands were clean, then up to my wrists, then further and further up."

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At the height of Ms. Clark's obsession, she was washing almost constantly, and couldn't have any guests over for fear they would find out. Ms. Clark knew her fears were illogical, but they still dominated her life.

Less than 10 per cent of OCD cases clear up without treatment. With proper care, though, as many as 85 per cent of cases improve. Many Canadian experts agree the ideal treatment is a combination of medication and cognitive behavioural therapy.

As a first choice, doctors tend to prescribe SSRIs -- a class of drugs that regulate serotonin levels -- such as Prozac, Luvox, Paxil and Zoloft. Other agents that can be effective are clomipramine, phenelzine and tranylcypromine. Medications can take six to 10 weeks to have a beneficial effect. About half of patients respond well to medication, but symptoms rarely disappear completely with drugs alone.

Cognitive behavioural therapy (CBT) is an expanding field in OCD treatment, especially in Canada. Teams of psychologists and psychiatrists in Vancouver, Hamilton, Toronto, Montreal and Fredericton are working on improving CBT.

"It is perfectly true to say that Canada is an international leader in this field," said Dr. Mark Freeston, Medical Research Council scholar at the Centre de recherche Fernand-Séguin in Montreal. And CBT is already proving extremely successful in many cases. "Generally, if you can get people engaged in therapy and stick with it, 80 to 85 per cent have significant improvement and some are even completely cured," he adds.

The bad news about CBT is that there are huge slices of Canada where patients do not have access to it. Dr. Maureen Whittal, head of the anxiety-disorders unit at University of British Columbia Hospital in Vancouver, knows only too well about the lack of accessibility.

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One of her patients became a tragic example of falling through the cracks. A young woman from a small town in B.C. had OCD so severely that she had spent 50 days in her local hospital before she was transferred to Dr. Whittal's care. Rural doctors had been giving her a 20-year-old, ineffective therapy called "thought-stopping," in which you snap a rubber band on your wrist every time you have an unwanted thought.

When the woman arrived in Vancouver, Dr. Whittal was horrified to see she had a nasty bruise on her wrist. Once in proper care, the woman flourished. "I saw her five times for CBT, got her set up and sent her home. Before, she hadn't been able to go out and was afraid to touch anybody. Now she is out and about and working full-time."

Dr. Whittal calls the botched treatment not only tragic but, at $1,000 per day for a hospital bed, "a colossal waste of money."

Even so, a new way of delivering behavioural therapy, in which OCD patients use their phone to access computer-generated help, may solve accessibility problems.

The new approach, called BT STEPS, involves phone calls to a toll-free number, where a computer-driven voice response system helps them assess and treat their own disorder.

Patients call in to the computer at the beginning of the session to report their level of anxiety, pinpoint their obsessions and compulsions, and then set personal goals. They are encouraged to keep a diary of their progress and get a friend or family member to support them as co-therapist. The computer program then teaches them to expose themselves to whatever triggers their compulsions, while preventing the rituals.

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Phase III clinical trials, which were completed last summer, found that this new method was "almost as effective as face-to-face behavioural therapy," said Julie Harms, the Madison, Wis.-based manager of the project.

Ms. Harms said BT STEPS may be available for general use by the fall of 2000. And that could mean patients like Elizabeth Ando won't have to wait while things go so desperately wrong before they get the help they need.

HOW CBT WORKS: THE CASE OF JOHN

Cognitive behavioural therapy (CBT) is an evolution of its better-known cousin, behavioural therapy, in which the obsessive-compulsive person is exposed to the thing they fear, and which helped to eliminate the ritual the fear usually prompts. Many patients find traditional behavioural therapy daunting and they drop out, says Dr. Freeston. The "cognitive" in CBT is more exploratory and less scary, says Dr. Freeston, so more patients complete their therapy.

In essence, the cognitive-therapy process involves appraising the obsessional thoughts and building evidence that they are not meaningful. Together, the patient and therapist develop a new explanation for the thoughts, and then, starting with small parts that the patient is willing to work on, they begin to test the new explanation. CBT typically takes an hour or two a day for about three or four months, and can then extend longer if necessary.

John, 45, from Toronto (he didn't want his last name used), is an example of how CBT can work. John believes he has had an obsessive-compulsive disorder since childhood, but it was in his 20s, when he lost both of his parents and a good friend in a six-year period, that things began to spiral out of control.

He developed the superstition that if he drove or walked past a hospital or a graveyard, he could cause harm to his sisters and their children. He believed it was his responsibility to protect them and, in order to do this, he had to "undo the damage" by retracing his route exactly. Even walking by a picture of his dead grandmother in his apartment would trigger the need to walk a certain way around the dining-room table to protect his family from harm. "I had to do things over and over again until I got the right feeling," he said.

John's rituals of doing and undoing things became so time-consuming and disturbing that he was forced to quit his job as a park attendant. Finally, he called the Canadian Mental Health Association for help and, after a year on a waiting list for CBT, he ended up in the care of Christine Purdon, professor of psychology at the University of Waterloo, in Waterloo, Ont.

In John's therapy, Dr. Purdon chipped away at the supposed power of his prophesying.

"If you can make bad things happen, can you make good things happen? Like, can you win the lottery?" Dr. Purdon asked him. He agreed that was ridiculous. They began to build evidence that he couldn't harm his family in the ways he was worried about. They started small by having him walk by the picture of his grandmother without doing the neutralizing actions. Within months, Dr. Purdon was able to take him into a hospital, an act that for the previous 20 years would have caused extreme anxiety. John says few traces of the disorder now remain. "Finally, things are going well," he says. "It is like a new beginning."

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